Young Adults with Tinnitus — Please Respond in Solidarity

Agree with @LukeYoung. Acceptance is critical. You have a bright future. Be thankful it's only one ear. When you have bi-lateral it sometimes feels like its coming from the center of your brain. Take care of your other ear. I had it worse in one ear and decided to use my plantronics headset in the other ear for the past few years. I'm sure it's caused my good ear to catch up with the worse ear. Take care of yourself.

 

28 with moderate/severe tinnitus for the past two years that transfers dominance between ears (sometimes worse in the right, sometimes in the left). I don't have any supporting words but you're not alone.

The problem with acceptance is that you can't accept something that constantly fluctuates and is constantly at risk. It's always on your mind and is guaranteed to get worse as years go by.

 

For me it's always coming from the brain

 

I'm 23 with tinnitus being the worst in my right ear, which sometimes shifts to my left ear and my head. Additionally, I certainly believe that I have UHF hearing loss and/or hidden hearing loss (5 different standard audiograms came back as all normal). Hearing friends and family in noisy places is oftentimes unachievable. Even hearing someone facing away from me or in another room can be a challenge. Watching TV and listening to music isn't the same as well. The crispness and clarity of my hearing is just not what it once was.

However, I think that FX-332 has great potential to ameliorate many, if not all of these issues of mine. I think that holds true for many of you as well. If you guys can, try to enroll in the clinical trials for this groundbreaking drug, or for OTO-413. We are fortunate, we are young and have many years for science to evolve and arrive at a cure. Although, I would certainly like to enjoy my 20's as well. This is why I think these clinical trials are so appealing.

Again, I am very very confident that we will all have our hearing fully restored in the future. Investors have shown significant interest already in these clinical trial stage drugs, and whoever can fix hearing loss, tinnitus, hyperacusis, etc. will receive billions of dollars in profits. Money is a huge motivator, and interest in this field of research is growing rapidly. This may sound ambitious, but in my opinion, if all goes well with FX-332 and OTO-413, ALL of us will receive improvements with our issues, or perhaps the elimination of them in about a year.

There is a light at the end of the tunnel for sure!

 

Hi Clare,

I'm 32 - started experiencing T at 30. First 3-6 months were a mess. No sleep, crazy catastrophizing thoughts and anxiety like I've never experienced. Two years later I'm in a MUCH better place. I can be very certain it will get better and you'll live a great life - possibly without T given all of the advances being made not to mention you've only had it for 4 months.

Things that have worked for me;

30 days of 10mg melatonin to get my sleep back on track
Consistent exercise
curcumin/magnesium glycinate/omega-3 and ginko supplements
low volume music distraction as often as I can

Good luck and let me know if you have any questions.

 

You’re not wrong man. I’m definitely not saying it’s easy...

It’s still fuckin hard.
The acceptance part is about reducing anxiety, you’ll still be anxious but a reduction is better then being in constant fight or flight.

 

23 with mild/moderate tinnitus and hyperacusis. Ringing started when I was 17 from playing in 3 high school bands and it got way worse (plus hyperacusis) 4 months ago from loud music on a date.

I feel pretty deflated, even when it wasn’t bad it still weighed down my soul. But I’m slowly pulling myself back up. There are promising treatments only a few years away, and I’m doing my best to live a joyful life until modern medicine comes to our rescue.

When it first started, and again when it worsened, I felt like I had been unplugged from the world. It was completely devastating. Slowly I’m becoming reattached, and I’m really forced to look at life and understand what I truly value.

 

What makes you say this? I already know the answer I’m just curious as to what you think.

 

This can be quite hard for some people. I learned to accept it because I was devoting so much mental energy to the sound. I was scanning for the sound before. I'd check to see if I could hear it. When I did hear it, it just gave me bad feelings. This was when I had it at my best, very low, barely noticeable tinnitus.

I have tried all the promises, that would help me rid of my tinnitus in my over 32 years living with it. I been there and done that. Once I saw that this might be permanent, then I just faced it. I said that my ears will ring and I accept that. I do not remember when acceptance came, but it's been a good thing.

It has taken lots of work to reach this level, I have been at it for a long time and just pushed each day.

Now I have severe tinnitus and it's 5 to 10 times worst, and I still accept it and just do my best to live a life....

 

I accepted it for the last 5 years while it was fairly stable. I made the mistake of not pushing through the last few weeks. I now see the how important it is to stay in that state and I'm getting back to it. We have no immediate hope of getting a cure, we can only accept and move forward. @fishbone Do you have a link to your story? I hope to live that many years with T and would welcome learning from your journey.

 

I'm seeing your threads, I'll catch up on those and post in those. These look very helpful!

 

I find that when tinnitus is very mild it’s so tempting to check. The thought is “Oooo, maybe it will be gone this time! Exciting!” Now that my tone is louder I don’t bother checking for it. I know it’s still there.

 

For sure! I know how it feels, I was checking mine all the time too. I was telling people over 32 years ago that my ears were ringing and they said I was delusional, so I'd check again to see if it really was there. When It became chronic, then I knew it was there and slowly tried to shift away from listening to it.

 

I’m 21 with raging loud tinnitus since December... it’s been hell of a ride and changed my life completely, it’s really loud and really hard to mask. I actually had doctors surprised how loud mine is so yea you are not alone and I’m not either.

Also an audiologist I spoke with doesn’t feel like there will be a cure since it’s in the brain and can’t be measured on paper... I say fuck them and believe that one day someone like Susan Shore will bring relief to all of us and till that day we fight on!!!

 

Thanks for this thread and everyone who has contributed to it. Reading this has already made me feel less alone. It’s funny because I actually assumed some of you were much older for some reason? Maybe because I don’t know many young people with tinnitus personally or haven’t heard of it. If I had I probably could have avoided it and wouldn’t be here. I’m 24 just barely, developed it this year in January. I now wonder if I was bound to get it eventually. If it wasn’t this year in January would it have been some other month or year? I guess I had too much loud music, plus I think the medication Tramadol had something to do with it. Can’t help but wish I could turn back time. Just trying to get on with my life.

 

I'm 20 and I have had tinnitus since 18. It's worse, but mainly because I wasn't careful enough around sounds. The tinnitus did stop me in the tracks, but I am faithful we will have a cure/cures for tinnitus in the future. Just chilling out most of the day lately.

 

Wish I could have that mindset, I just cant. Im too logical. There's no room for hope in my mind. Only reality. Explains why I started questioning my religion at like 14.

As condescending as that might sound, I envy people like you. At least it would give me the strength to power on.

 

@jasonbourne you don’t believe there will ever be a cure or relief?

 

21 here with plenty of ear problems. Started with a bad infection, got sudden hearing loss right after, which turned to be a bilateral cochlear hydrops. I've had maybe a dozen episodes already, luckily hearing has always recovered.

It's been a year now and the symptoms of the infection are still kicking. I'm feeling hopeful though that the hydrops problems will go away once I get this shit out of my system. I do have tinnitus as well, but as a music producer, I'll be very relieved if this all settles to just that.

 

You no longer have an infection but still have symptoms? Or am I just confused? And what kind of ear infection if you don’t mind me asking. I’m only asking because I still hve odd symptoms after my ear infection has cleared up to the point I think it’s coming back but I’ll look at it with a camera phone and it looks fine...

 

Hey, sorry wrote that in a hurry. Didn't mean ear infection, no. Just a weird flu/something that left me with a mysterious rash and weird prickly feelings all over body that come and go. And the hearing problems. It's been a year and all of those still exist. Doctors have no clue so I'm pretty much on my own here. What kind of symptoms are you exactly having?

 

Hey Clare

I’m 23, and I got tinnitus 5 months after turning 22. You’re definitely not alone. I don’t know anyone my age personally that has this, and I’ve always been conscious of my health (exercise often, eat healthy, wear hearing protection). The one time I didn’t wear ear pro and stood too close to a blaring speaker I contract tinnitus. I was at a low point early on, and now I’m living life just as before. Being inside your head and dwelling on the condition is the worst plan of action. It will get better in time, you must trust that.

 

You can certainly still pursue music with noise-induced tinnitus. I have noise-induced tinnitus, and I still play guitar, attend shows, etc. The difference is I put high rated ear plugs in when I attend these shows and don’t hug the speakers. Unless you have criminally loud tinnitus that’s reactive, you should be fine doing these things. Keep playing music and don’t let your mind run wild with negative thoughts. There are many musicians still performing with tinnitus (Kirk, James, and Lars of Metallica all have loud tinnitus).

 

Revolutionary new therapies in the pipeline like FX-322 ARE reality.

It's illogical not to have hope!

 

Maybe the poster was referring to the perception of head noise over tinnitus peripherally...

 

There’s nothing logical about disbelieving that a cure is on the way. We’re learning more about tinnitus everyday, just as we are about a myriad of conditions. The trend has changed. Companies are not only trying to make products that make dealing with T easier, they are tackling the mechanical forces causing the phantom ringing. I don’t know enough to give a timeline for a cure, but to say that it’s not on the way is a stretch.

 

I agree with this. Furthermore, this being a thread for young Adults, I believe it's in our hands to be the first generation to not die with tinnitus/hyperacusis. We need to mobilize.

 

I think they will figure it out sometime just not sure if it will be in my lifetime or specifically work for me. If it does that would be great I have hope they’ll figure it out but I don’t wanna lean on it too much. I try to make myself be as ok with what is now as possible. Which is easier said than done. But yes they better come up with something soon!! We all need it.

 

I'm 32 now but I've had tinnitus all my life so I feel qualified to post here. It's caused me a lot of mental suffering and anxiety over the years. But it hasn't prevented me from living my life. I have a degree, cool job, apartment, loving partner, good friends, really everything I could possibly wish for. Tinnitus sucks but you can most definitely live with it.

I think today's youth will be the generation with the largest prevalence of hearing loss and tinnitus. It's rare to see a young adult or teen without headphones or earphones sticking out of their ear canals, not to mention the insane volume of today's concerts.

But this is good news for us tinnitus sufferers: this also means there'll be a gigantic market for treatments. And companies apparently seem to realize this very much and are frantically working on treatment options. They've already started hitting the market and I expect a steady cadence of new treatment options released every 1-3 years from now on (more bimodal neuromodulation devices, then the various hearing regeneration drugs etc).

 

I'm 23. Lots of friends, all between the ages of 20 and 30, have mild tinnitus too. Something I didn't know until I talked about mine. They all go out, have or have had a relationship, a job, etc. I guess in their cases it is all really mild and they're used to it, but still. It's definitely all possible for the majority.

Mine is likely not noise induced though, nor caused by an infection, so I may get lucky.